Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, January 13, 2013

Making Connections

I want to preface by saying I am incredibly grateful for how Meagan is doing right now.  I don't take one thing she does for granted.   I also realize that Hydro is not a one-way diagnosis.  It is a multi-faceted spectrum.  I make sure to never forget that Meagan's Hydrocephalus is uniquely Meagan's Hydrocephalus.  It's important to remember her Hydro brothers and sisters who are going through more difficult battles, but at the same time, it's ok to honor her life by rejoicing in the things she can do too.

The one consistent truth about Hydrocephalus is that there is no comparison of Hydro kids.  As another Hydro mom always told me, the kids are like "snowflakes."  Each beautiful, yet each very very different.  It was the perfect description for me to grasp on to and remember as we go through Meagan's journey. I have thought about this and for us, I like to think of it as a rainbow.  Many colors, some bright, some faded, some prominent, and some peeking between the clouds.  But without even one of those magnificent colors, the rainbow wouldn't be as interesting. It wouldn't be that rainbow.

Meagan's journey is only her own, and my emotions surrounding it are only from that personal experience.  Just as the kids are different, so are all of our stories... and that is what makes a multi-faceted group of people, like the Hydro community, strong.  We each have points we can speak on that strengthen or reach some other mom out there who feels all alone in this mess.

 As I wrote a few posts back, Meagan is babbling now like crazy.  She is still making lots of sounds and still watching us closely as if she wants to say or do the exact things we do with our mouths and our voices.  Even so, I realize that with brain injury, there is always that two sided reaction to new milestones.  The first is of course happiness, that they have reached another goal, but the second is .... will we see the next goal met too? Or is this it? It's not a depressing thought by any means, because nothing will change Meagan from being Meagan, but, it is still something that crosses my mind every time she does something new.  I think it's more of a defense mechanism.  Preparing us if new things don't come, but then when they do, allowing us to have that joyous surprise that every new skill brings.

I decided lately since Meagan has shown "interest" in babbling and our speaking patterns, I would at least help her start to connect those with real life.  She babbles a lot, but, she does not associate sounds with definitive people or things just yet.  She says "dadada" at our dog, her sisters, looking outside, her dad, and the kitchen counter.  She says "mamama" to the dog, her sisters, looking outside, her dad and the kitchen counter.  You get the point.  The sounds are wonderful.  But I want to try and help her, if I can, make a connection between her sounds and actual people or things.  I want her to realize she has a new way of communicating with us if she can grasp the concept.

I started with "Mama" simply because I am with her almost all the time.  I did some simple things with her back and forth between us.  I have been putting my hand on her chest saying "Meagan" and then putting her hand on my cheek saying "Mama." I have done this over and over again, throughout the day.  At night, I let her lay next to me, and we continue the "Meagan.".... "Mama".... before she goes to sleep.  I was playing with her today, and I *think* she is starting to "get it" sometimes.

I'm excited to see her "thinking" as she watches me.  I know that little mind of hers has so much she wants to tell me. It's not technically the "correct" sign language.  It's probably not really "technically" much of anything.  But it's something that seems to work for us.  Meagan seems to like our little method, and so I stick with it. Just as each child is different, so are the methods we find that seem to help them.  If I can help her make even a small connection with that voice of hers, then I know her little world will open up so much more.  Making connections is a new color we can add to the multi-faceted rainbow that Meagan is. Each color that appears leads the way to new hope for us, and new hope for her future.  Hope that seems bright even among the darkest storm clouds. 

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